The second instalment of the IIEA’s Ireland and the European Health Union discussion series, supported by Janssen Sciences Ireland, features contributions by expert speakers who will discuss the role that the EU can play in improving care for patients with rare diseases in Ireland and across the EU.

Many of the 6,000 to 8,000 different rare diseases are life threatening and are often lacking in accurate diagnosis and, oftentimes, only limited treatment options exist. Meanwhile, major inequalities in standards of care and outcomes for people with rare diseases prevail across Europe.

As part of its new Health Union, the EU has identified rare diseases as a health priority and is pursuing a number of initiatives that are designed to improve care and access to medicines across the EU, and regarding drug and treatment development, genetic testing and diagnosis, data sharing, and research activities.

At this event, speakers discuss what these developments could mean for national healthcare in Ireland and across the EU and consider how Ireland compares to European peers in the care of rare diseases. Speakers also reflect on what the future may hold for rare diseases, including the potential impact of the upcoming EU package of pharma legislation as well as other expected policy developments.

Our guest speakers include:  

Billy Kelleher, MEP
Vicky McGrath, CEO at Rare Diseases Ireland
Prof. Sean Gaine, Consultant Respiratory Physician at the Mater Misericordiae University Hospital
Jennifer Lee, Therapy Area Market Access Leader at Janssen

Ireland & the European Health Union: What will it mean for rare diseases?

Ireland finally beat New Zealand in 2016.
With brilliant commentary from New Zealand TV and previous heartbreak from RTE Radio one and idiotic predictions from Second Captains.

Music: 
Wisdom from Brian Jonestown Massacre https://itunes.apple.com/ie/album/tepid-peppermint-wonderland/id1056856909

And Wasting My Young Years by London Grammar
https://itunes.apple.com/ie/album/if-you-wait-deluxe-version/id675018027

"Drops it off to Henshaw!" - Ireland Beat The All-Blacks

Tackling climate change is one of the main challenges of the 21st century. Last November the latest UN Intergovernmental Panel on Climate Change (IPCC) report warned that we have just 12 years left for effective action to be taken against rising temperatures.

Over the past decade the European Union has led action for climate targets among Member States. In 2015, under the landmark Paris Climate Agreement, the EU committed to reducing emissions by 40% by 2030, compared to 1990 levels.

While some EU member states have made significant progress in meeting their targets, others including Ireland, are lagging behind in meeting these commitments. Meeting these targets will require ambitious action by Member States to reduce emissions in key economic sectors. The agricultural sector is one of Ireland’s most important industries, yet it accounts for over 30% of greenhouse gas emissions, making it the single largest contributor to Ireland’s total emissions. There is an urgent need to reconcile the need for urgent climate action and the need to protect the agricultural sector’s competitiveness and the livelihoods that depend on it.

Political leaders and policymakers have to find solutions to this challenge now. This is not a challenge faced by Ireland alone. Across Europe, policymakers and politicians are looking for solutions. In France, the Yellow Vest protests were initially sparked by increased carbon taxes. Clearly, a considered but effective approach to climate action is required to ensure a just transition and minimal economic and social disruption.

This event is part of the IIEA’s Future of the EU27 Project, supported by the Department of Foreign Affairs and Trade.

Event Chair: Niall Delaney, Presenter, Ocean FM
Audience Q&A Begins at: 36:36

Speakers:

· Marian Harkin, outgoing MEP for the Midlands/North West Constituency;

· Martin Kenny TD, Sinn Féin Spokesperson on Agriculture, Food & the Marine;

· Thomas Cooney, Chairman of the IFA National Environment Committee

· Dr Pippa Hackett, Green Party Spokesperson on Agriculture, Food, Forestry, Heritage & Animal Welfare.

Climate Change and the Future of Agriculture: A Debate on the Future of Europe

Sharing Ideas Shaping Policy. The Institute of International and European Affairs is an independent policy research think-tank based in Dublin.

Ireland & the European Health Union: What will it mean for rare diseases?

IIEA

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